Talking About Progressing Disease With Terminally Ill Adolescents

Discussing Terminal Illness With Adolescents: Honesty is the Best Policy 

Communicating with adolescents can be a delicate task when it comes to discussing everyday items, but when the conversation transitions to end-of-life care in a terminal adolescent patient, the discussion becomes ever more challenging for physicians. Adolescents are developmentally at a complex stage of life: enjoying newfound independence while simultaneously seeking parental reassurance. Physicians must delicately discern the maturity level of the adolescent patient as well as the relationship with his/her loved ones before disclosing information. This discernment is quintessential when determining whether the next step consists of further intervention or comfort care.  

One of the techniques used to approach these difficult conversations is a method called Ask-Tell-Ask. Ask the patient and parent(s) about their experiences, expectations, and information needs; tell truthful prognostic information; ask if clarification is needed. Acknowledging the concerns and worries of both patient and parent(s) creates a foundation of trust that can be built upon in further conversations. These conversations need to be continuous, and timing needs to be appropriate. However, the conversation can be met with parental resistance. Understandably, some parents are hesitant to inform their children of their prognosis in order to protect them from the emotional distress. Although altruistic in intent, this may in fact weaken the bond of trust between parent and child and neglect patient autonomy. Again, using the Ask-Tell-Ask technique promotes conversation about the origin of the concern. Parents may fear ultimately regretting divulging information or assume that the knowledge will upset the adolescent, all legitimate worries that warrant further discussion. This emphasizes the importance of an interdisciplinary team approach during these interactions. When communicating information to parents and the adolescent patient, it is crucial to have the support of an interdisciplinary team consisting of psychosocial, spiritual, physical, and emotional support. This, in fact, is the core of hospice and palliative care and can help facilitate more fulfilling terminal days of life.

As disease burden increases in terminal conditions, the goals of care should frequently be revisited. Reaffirming complete honesty with the adolescent before breaching the topic of goals of care is essential. Next, simply asking the adolescent how much he or she would like to know or if he would prefer some things be left up to his parents will ease the burden on the patient. Some helpful phrases to understand what the patient’s wishes are may include the following: “what is your biggest worry?” “what are you hoping for?” and “what is most important to you?”

As with most skills, practice makes perfect. These difficult conversations become easier with repetition and by finessing these statements into one’s own vernacular. The adolescent patient and supporting family members will appreciate genuine, frank conversations that offer space for further discussion and follow-up. Physicians must accept their own feelings of vulnerability when having these conversations while always remembering that honesty really is the best policy.